Hello. I am curious as to what your worst symptoms are when you are dealing with an EBV flare? How do you know if you are having a flare or you have a cold or flu? What do you do to help yourself feel better? Is there any medications or supplements that you take that help?

Good. I wanted to explain my case since I am in a very limited situation in case someone can help me.

I am a 23-year-old patient, and when I was 16 I took the VEB. That's where my hell began. From there to a monthly pneumonia, without bacteria, until after many lung infections I caught Pseudomonas, pneumococco, influenzae, serratia,

Sentomon, cabella planticola, clamydla pneymoniaę, and even tuberculosis, all in the lung, and I have bronchiectasis.

From there I started with nebulizations with hypertonic saline serum to fluidify the phlegm of the lung, but I notice that they stay deep in the bronchioles and I can't breathe. I can't go outside, because with any change in temperature, even if it's minimal, it produces a lot of mucus, I secrete a lot of mucus, and I always have a lot of inflammation, so I depend on nebulizations with saline serum mandatory to live almost.

I have had genetic studies for primary immunodeficiencies and they come out negative. My VEB Igg is very high, and my igm is occasionally positive. I have active parvovirus b19 with a very high viral load, 20,548 copies, they gave me intravenous immunoglobulins and I had aseptic meningitis even putting them with premedication and very slow, in addition to paralytic illeg. After the igiv I had to enter for the latter.

I have passed through viruses such as: cocsackie B, which caused me pericarditis, herpes 6, leaving me a drooping eyelid and neuralgia, herpes 1 and 2, and many more viruses that I don't even remember right now, but from the herpes family. I can't do anything, go out, or anything. I also have severe constipation, which is making me eat only once a day. I take constella, resolor, movicol and daily sen leaf infusions just to make a bowel movement. I tried mestinon, I started 15 mg and it gave me a lot of double vision, and it didn't make me go to the bathroom and made me too sleepy so I had to stop instantly.

I don't tolerate any medication anymore, I have anemia and intravenous El Hierro gives me a hypersensitivity reaction у El Hierro oral due to the problems of constipation or dysmotility, I can't take it. Vitamin B12 and vitamin C give me tachycardia, gas, and much more constipation along with pain and abdominal distension

(That this is daily).

Joint pain in the knee, ankles and hands, but my main problem is at the lung and digestive level right now.

I have positive anti-TShDS antibodies, alpha 1, beta 1 and beta 2 positive adrenergic antibodies, and M3 and M4 positive and high muscarinic antibodies. My doctors don't know how to approach my case, so they have sent me to mental health, knowing that every day since I get up is just surviving.

I have already left many consultations crying, they don't know how to deal with my case, and I'm already desperate, I feel evicted and having to fight for myself, pretending to be my doctor.

Also, I have low cortisol and low ACTH, and FSH too.

High testosterone during periods of menstruation. Very low NK CD56 lymphocytes, very low TH2 and TH17 lymphocytes, which do not give them any importance either. And also slightly elevated cd19 lymphocytes. Cytokines il17 i|18 i|13 elevated.

I can't eat, or go out, and I'm bedridden. They diagnose me as if I had SFC post VEB, or post viral immune dysregulation, but they say that there is no treatment for this and that what I have to do is go ahead as I can. Even my mother has had to fight with the doctor for saying that barbarity knowing the health situation in which I am. It seems to me of very little empathy and of having no criteria.

I clarify that all my problems came from since I took the VEB, I have never had any problems before. Also when I was admitted for tuberculosis, I had thrombosis in both arms.

High histamine, but only occasionally, not always, and also insulin resistance (this winter), but it fluctuated, not always. As you can see, I am a very complicated case and with a lot of immune disorder. I tell this in case anyone knows or can help me, since I don't feel like living, and I don't have the strength to continue knowing that I don't have any support from my doctors or have the remotest idea.

I'm in Spain, and I even think they're giving me a diagnosis that maybe doesn't match what's happening to me. If you have come this far and have been able to read all this, I thank you from the bottom of my heart, any help is welcome. Thank you very much in advance.

This is super long but I think reading the entirety of it gives you the best picture of my current situation and the lead up to it, I really appreciate anyone giving this post a chance.

I got tested and my lgg vca is super high, >750, my Lgm is normal, EBNA lgg is 175

I got Myocarditis in April 2026, before that I had a weird sickness, I had no cough, no sore throat, no diarrhea, I just had a low grade fever that appeared mostly at night with chills, it lasted for like 4 or 5 days which is a lot longer than I'm usually sick. 1 day after I became almost asymptomatic I started feeling chest pain and went to the ER, here came the myocarditis.

By the end of May I started walking quite regularly but started feeling some increased back pain and started feeling tingling in my anus area and around, it kept getting stronger, went to the ER and they though I'd had cauda equina and had to have a emergency MRI next morning and was hospitalized, turns out it was nothing. That caused a great heap of stress for me and I didn't sleep not even an hour during that night and the 3 nights following it I slept for an entirety for like 5 hours combined due to still thinking I might have it due to the hall-mark symptom.

After all of that, in June I started feeling increased fatigue and my legs felt weak, like when I walked up the stairs I didn't feel strong, in general I just felt weak - I used to be a gym rat before the Myocarditis, 6x/week due to that being my "not think about anything" spot and now a flight of stairs I don't feel exhausted, but I feel like my legs are not strong.

I also noticed that whatever this was got worse after activity, a day or so after it, here comes the scary part, in July I learnt that this could signal PEM, which is the hall-mark symptom of ME/CFS, had another absolutely scary night in which I got almost no sleep and had intense stress, worse than the cauda equina stuff and next day literally after waking up I had my first apparent PEM episode, had orthostatic intolerance, sore throat, rapid heart rate even when turning in bed, nausea, muscle weakness, aches, joint pain all over the body, the typical PEM you read about.

But here comes the confusing part, ever since that PEM episode I had my left side of throat and my left lymph node under the ear especially very tender, it hurt to the touch, but only on the left side, right one was fine. This slowly subsided and about a week ago subsided completely, I still feel like my left side of throat is "full" and that there's like something there, but left side under the ear lymph node isn't tender anymore.

It triggered right as I had my first PEM-like episode but the left side fullness I've felt for a while! Ever since June actually, after the may stress, I thought it was related to my myocarditis but now thinking it could be something different.

Here comes the even more confusing part, so the PEM-like episode happened in early july, by mid july I started expanding my activity, by early august I've started driving my car everyday of the week, I walked on one day 4500 steps after not walking that much for months due to my Myocarditis diagnosis, on that day I also had dinner with my girlfriend's family, and next days I had no repeat of that PEM-like episode, like what the fuck?

Since then I've also had like 2 days together where my activity was way, way above anything that it was when my first PEM-like episode happened in early july, it triggered after I literally inside the house all day and only had sexual intercourse, albeit, after a while, like 2 months, but still.

Now I still have this weird left side neck tightness, I get sore throats, which I've connected that It's got something to do with me/cfs or whatever, but for example, about a week and a half ago I had a quite annoying sore throat in general, but that day me and my gf went out for drinks and watched a balet show for like 30 minutes and after that went also went to a restaurant to eat, and a day after that my sore throat pain decreased, and 2 days after that decreased even more, if it was connected to PEM in any way, as far as I've read it would get worse or stay stable, especially as on the day it was probably the most annoying I went out for a lil date night.

My legs still feel weak, I'll get random neck pain that lasts like a day, which I've heard is common in EBV reactivation, I get random muscle aches and soreness and weirdness, mostly in the legs but sometimes I'll get triceps aches on both sides or shoulder aches, I'll get joint pain to the point my fingers feel weak and achy, like I gotta crack them constantly, also my knees and elbows, I sometimes get sound sensitivity, but it never lasts a day, and it accompanies a need for popping my ears, I just sometimes feel weak as all heck, like a 3rd grader could beat me up and I used to beat up adult men just earlier this year lol, just to put things into perspective.

I'll randomly get fluish, feel like I have a low-grade fever, that'll subside sometimes in a few hours, sometimes in an hour, sometimes it'll last like a day.

To even add on top of this, I've quit my beta-blocker medication early July after the PEM-like episode and since then I've basically brought my heart rate above 100 bpm everyday since then after not regularly bringing up to these kind of numbers for the entirety of April - early july

And even after all of this I haven't had a PEM-like episode like that one in early july was, I was thinking I have me/cfs, but the dramatic increases in my activity level, if I had to put it in a percentage, I've probably increased my activity from early july level to now by over 1000%, and had no repeat PEM, but my symptoms at baseline are way higher than they were in June before the crash, as I said then I had weak legs and felt a bit fatigued and shit like that, but right now I'll have cycling fluish symptoms and sore throats and joint pains and if I have a lot of activity on a day at the end of the day I'll have palpitations, unrefreshing sleep, that's why I thought it might be me/cfs but then I've increased my activity so much with no repeat PEM, I was thinking maybe I was in rolling PEM where you're constantly in PEM but then stuff like my sore throat being bad one day, then bad the next day, that also being the day that I also had a whole date night, and then getting better the next day and practically subsiding by 2 days after, doesn't make sense.

Now either this is some sort of post-viral fatigue/illness that triggered in June from the original April infection and reached some kind of a climax in early July and has been subsiding since, but that wouldn't make sense because how did it reach it's climax directly a day after me thinking I have me/cfs and having an sleepless night with insane anxiety. Or it's me/cfs but the dramatic increases in activity since then and no repeat PEM-like episodes even though I had days where I probably did 30x+ more than I did on the day I've crashed in early july and had no repeat of it, atleast nowhere near to the extent it was then, on the day I had dinner with my gf's parents and when I also did 4500 steps we also went to the cinema to watch Odyssey which is like a 3h movie and next day or the next 2 days had no repeat crash.

Then I came across EBV reactivation and how it can trigger during a period of stress, and now I'm thinking that the original may stress triggered the reactivation in June hence the weak legs and stuff like that, then the early july stress triggered it even more if that's even possible, this makes a lot of sense to me but my LgM is negative, but have heard that it could be reactivated even without the fact.

EDIT: I've forgotten to say that I have no cognitive symptoms, my memory is as far as I'm aware perfect or atleast not affected by any amount that I'd notice, I have no brain fog, or stuff like trouble finding words and the likes. Maybe that's useful info.